The Summer of My Discontent

A Chicago Peace Rose from my garden serves as a reminder that even when I'm navigating rough waters, I can and will find peace again. Photo by Amy Rauch Neilson.

I never saw it coming. Then it hit me. Like a brick wall or a Mack truck, or any other large, unyielding object you can think of. A Supermoon, perhaps.

I don’t even know specifically what triggered it. I wish I did, because that would be some pretty important Need to Know Information to pass on.

It was June 2007. Chemo had ended in late July, 2006, and I’d had my final reconstructive surgery in December. My breast cancer had been a Stage 1. The tumor was the size of a blueberry and hadn’t spread to my lymphatic system. The surgeons got it all — I had what they call “clear margins.” The percentages were so in my favor — 98 percent cure rate — that I should have bought a lotto ticket.

I had the best possible case scenario in a very scary diagnosis.

Still, I had what could probably best be described as a nervous breakdown that summer of 2007.

I couldn’t eat. Everything tasted like sand. I lost 30 pounds in two months. I couldn’t sleep. Couldn’t function. Couldn’t do much more, really, than cry most of the time. Yet, I wasn’t able to articulate why.

Don would come home on his lunch hour just to try to get me to eat something, anything. I’d sit at the island in our kitchen, a PB&J on a plate in front of me, as Don coaxed me bite by bite.

But, little by little, I did summon the energy to do one of the things I do best – find resources, someone who could help.

I called a friend of a friend who is a genetic counselor at the University of Michigan. I knew I sounded like a nut case. Heck, I was a nut case.

That’s when I found the piece of the puzzle that had thus far eluded me. And here it is: About 50 percent of cancer patients wind up with clinical depression after they’ve gone through treatment. This, from the University of Michigan Department of Psych-Oncology (note that there is an entire department dedicated to this phenomenon):

“Am I going crazy?” Cancer patients often ask themselves this question, but according to psychiatrist Michelle B. Riba, M.D., M.S., the answer is usually no. “The distress is most difficult right at diagnosis and after treatment is complete, when the person re-enters his or her normal routine,” says Riba.

Emotional distress can be caused by any number of factors, including uncertainty about the future, pain, side effects of treatment, feelings of isolation or guilt, information overload, worries about recurrence, physical limitations, as well as financial and family problems. In addition, there may be psychiatric symptoms that pre-date the cancer diagnosis.

Furthermore, patients often don’t realize that chemotherapy, surgery and other treatments can directly cause or contribute to their psychological condition.

So is it normal for cancer patients to be depressed and anxious?

Riba says depression and anxiety are very common; 50 percent or more of cancer patients have depressed mood or anxiety or both at various times. Symptoms may include difficulty concentrating, inability to carry out one’s usual daily routine, intrusive thoughts and fears about their diagnosis and the future. “But it’s very important for people to seek professional help if these symptoms last for more than a few weeks,” she says.

I saw one of my chemo buddies at the infusion center last Tuesday, and something she said made all of this come rushing back. Last Friday was her last day of chemo. She was, of course, elated. But she was also feeling a bit tentative. Suddenly, she was going to be out in the world once again, on her own, no doctor looking over her shoulder every few days.

And that’s scary.

“I know they’re going to be checking me every three months,” she told me. “But what if? What if something happens in the meantime?” Like me, she’s a young woman with a young child and a husband to think about.

That’s when the summer of 2007 came rushing back.

It’s important for cancer patients and their friends and family to know this truth: Treatment doesn’t always end at the sounding of the last chemo bell. The physical part of the treatment, sure. But many of us need mental health support services at some point. We need to know how to reenter the world, go on with our lives, after having the pants scared off of us.

For me, that summer, it was the University of Michigan Psych-Oncology. That’s when I met Patty, who I still check in with about once a month. I am so grateful that we found each other. She has helped me to navigate many a twist and turn in my life and I thanked God she was still a part of my life when I got my most recent diagnosis.

If you’re a cancer patient or a close friend or family member, don’t overlook this important piece of the healthcare puzzle. There are people who can help. Give them a call, make an appointment, touch base.

14 responses

One of my best friends went through this after she beat cancer. She said it took her a long time to get help because she kept telling herself, “You don’t have a right to feel like this. You should be happy at the diagnosis.”

Oh Amy, it is so good that you have “come out” with this information. It is not really discussed, and even the oncologists don’t seem to recognize it. I was diagnosed with PTSD during the diagnosis phase of my BC experience….and continue to suffer from it a great deal. You have inspired me to look into getting a therapist again….I just can’t shake the horrendous fear of recurrence, the sense that I am mutilated, the feeling that I will just die from this so what is the point of fighting….
Blessed Be dear one…..you continue to be an inspiration.

Wow, you hit that one right on the head! I thought maybe it was a response to the long anesthesia and surgery. After the initial elation of having the tumor out my mood took a MAJOR hit. It can make a person feel guilty and ungrateful, after treatment has been apparently so successful, to not be skipping around and appreciating every minute of life.

I finished my chemo last April and reconstruction in September. I too have days when I feel depressed and then I think how lucky I am that I am here and have the most wonderful husband (best friend) to get me thru my days. My daughter and son are wonderful support groups to me and I could not live a day without them all.

Thank you for sharing. You are so right. After treatment is one of the scariest times. It takes so long to trust your body again that it won’t fail you. I am only 3 years out and anytime I have a ache of any kind my first response is “could this be cancer” and the next is to breath and be rational. And like a another person who commented said, there is such a guilt at not knowing why you are not thrilled to be cancer free. Shouldn’t that be enough? But all of that definitely takes time.
Great post today! I have been following since Bras for a Cause posted it.

Thank you, Amy. I have passed this along to my sister-in-law. She had a bone marrow transplant over a year ago. Two years ago she was diagnosed with two very rare blood disorders and a rare form of leukemia. Her last scan was clean but with side-effects from steroids, causing everything from diabetes (which she now needs insulin shots 2 x day) to extremely brittle bones – she is really struggling. I hope this might help her, too.

I wake up every morning and run to my laptop to check for your new blogs. I can hardly wait for the computer to boot itself on so that I can retrieve the new blogs. On the days there are more than one blog, I am so excited. Now call me selfish…….I hate the weekends. Now I know that you need time off from your writings to spend time with your family or just time to reflect, but for me those are the longest days, and I can’t wait for Tuesday ( Mondays for you) so that I can start out my day reading your blog. You have captivated me, and I am hooked. Put me down on the top of the list for your upcoming book.
At about the exact time that I signed up for your blog near the beginning of this year, my family was just receiving wonderful news about my 25 year old nephew that he was cancer free. He was diagnosed with testicular cancer last summer. He like you went through terrible chemo treatments, that sounds alot like yours. Then in Janurary he had a second surgery to remove a tumor that had been found in his abdomin. The tumor was benign. Our family has been on an emotional high ever since, and I want to relive that emotional high with you as you fight and win this battle.
God Bless you Amy
Deb

So many people never think of the After part of being sick. Can it really be considered After though if you’re constantly worried (and rightfully so) that it is going to happen again? Is there even an After? Or are you always waiting for the Next Time?

Remember when we were at chemo together the last time? Remember what I said about what you do for other people? Remember how I said that we all know you aren’t perfect, and that your trials and imperfections are what inspire people, not the expectations they have of you? Remember all of that? Yeah, well, look at the comments on this post, my dear, sweet friend. This is what I mean.

Thank you so much for sharing this information. After having lost five family members to cancer I thought I knew just about everything there was to know about the disease, but this was new information to me. It is so important for this to be discussed and thank you again for doing so.

[…] Don, of course, was very happy and encouraged by the news that we’ve made progress. Don’t get me wrong. I was, too, but the thought of still an unpredictable number of chemo treatments in my future just threw me into a series of wracking sobs. It’s interesting, because it made me think of a comment that my friend Scott Orwig left on my blog following my March 22 post on the psychological impact of cancer, The Summer of My Discontent: […]